Chronic Illness Road Trip Travel Tips

Traveling with a chronic illness can be difficult, but it’s definitely possible to travel and have a great time! Read on to see how I’ve made road trips work despite my challenging medical situation – travel tips at the bottom.

I was fortunate enough to go on two fun road trips recently. I got to go to Vermont with my husband and, a week later, to visit Mass MoCA (Museum of Contemporary Art), the largest contemporary art museum in the country, with my mom as a birthday gift (check out my Instagram feed for pictures). I’ve always loved traveling and going on road trips. I enjoy driving through areas I’ve never seen, especially on back roads. My family always traveled a lot, going on a few vacations every year, and as an adult I’ve done the same.

However, it’s become a lot harder to travel since I became seriously ill, like so many other activities that I used to do easily, without thinking. One obvious reason for that is my lack of energy – I struggle with fatigue, a general lack of energy and stamina, and I tire easily. I frequently do things that use up all my spoons, pushing myself past my limit, and have to deal with the consequences. If I reach a certain level of exhaustion while I’m doing something – out with friends or family, for example, I come across cranky, but in reality, I’m confused, having trouble processing information, and feel desperate to get home to my bed. It’s excruciating to do anything when I feel like that, and yet I often have to continue to do things – be social, drive home, set up my tube feeds, etc.

Because of my lack of energy, I have a limited amount of possible active hours in the day. I used to be able to drive for hours to get to my destination and then go out at night. I would wake up in the morning and do things all day – museums, walking around the town, going to the beach, and then go out for dinner at night. These days, I can’t go out at night, and I have to pick one activity per day.

Being tube fed adds another dimension to traveling. Road trips are obviously much easier – I’ll cover air travel in another post. I have to pack so much extra stuff – my pump, backpack, IV pole, tube extensions, syringe, tape, bags, and formula, and I always include at least one extra day’s worth of supplies in case something happens and we need to spend another night. If that happened and I didn’t have extra, I would not be able to get any nutrition.

So, traveling has become a lot more difficult, but that hasn’t stopped me. My husband and I have adapted and figured out ways to make it possible to go places and do fun things. Our vacations have to be longer – two days usually have to be set aside for just travel. Whoever I’m traveling with often goes out at night while I’m resting at the hotel. I’ve also worked out a list of other adaptations that I’ve listed below – I hope this helps my fellow spoonies who are traveling this summer!

Bring, borrow or rent a wheelchair. Many places like amusement parks and museums have wheelchairs and scooters you can borrow. Some medical supply stores offer wheelchair rentals, and you can get cheap, if not ideal, wheelchairs off Craiglist. Having a wheelchair is a great way to conserve energy, allowing you to do more each day.

Extra meds. For obvious reasons (if you get stranded and have to spend an extra day, if you lose something, etc).

Pack layers and multiple clothing options. Many of us who are chronically ill have trouble regulating our body temperature (hello dysautonomia). I always pack jeans and a hoodie, even in the summer.

Bring your own food. Many of us have digestive issues or allergies (or MCAS) and can’t rely on restaurants to have our safe foods or get our orders right. I even bring almond milk in a cooler for coffee. I don’t expect coffee shops to have almond milk, and if I don’t have it with me I can’t have coffee!

Extra medical supplies. You never know if you might get stranded somewhere, and you don’t want to be stuck without some essential component. I always pack at least one extra day’s worth of tube feed formula and usually two extra bags, because I’ve had problems with bags before and formula’s not much good without them!

Bring your own pillow. Having trouble sleeping is annoying for anyone, but can be catastrophic for the chronically ill. It really ruins my day and makes things so much harder if my already troubled sleep becomes worse. Having my own pillow helps with that.

Make a beach kit. Mine includes extra sunscreen, drainage sponges, medical tape, and sterile saline spray to clean my tube stoma. Read more about going to the beach as a tubie in my next post!